In Death’s Waiting Room Living and Dying with Dementia in a Multicultural Society care & welfare A U P Anne-Mei The In Death ’ s Waiting Room CARE & WELFARE Care and welfare are changing rapidly in contemporary welfare states. The Care & Welfare series publishes studies on changing relationships between citizens and professionals, on care and welfare governance, on identity politics in the context of these welfare state transformations, and on ethical topics. It will inspire the international academic and political debate by developing and reflecting upon theories of (health) care and welfare through detailed national case studies and/or international com- parisons. This series will offer new insights into the interdisciplinary theory of care and welfare and its practices. series editors Jan Willem Duyvendak, University of Amsterdam Trudie Knijn, Utrecht University Monique Kremer, Netherlands Scientific Council for Government Policy (Wetenschappelijke Raad voor het Regeringsbeleid – WRR) Margo Trappenburg, Utrecht University, Erasmus University Rotterdam previously published Jan Willem Duyvendak, Trudie Knijn and Monique Kremer (eds.), Policy, People, and the New Professional. De-professionalisation and Re-professio- nalisation in Care and Welfare , 2006 (ISBN 978 90 5356 885 9) Ine van Hoyweghen, Risks in the Making. Travels in Life Insurance and Genetics , 2007 (ISBN 978 90 5356 927 6) In Death ’ s Waiting Room Living and Dying with Dementia in a Multicultural Society Anne-Mei The Cover illustration: © Marcel van den Bergh / Hollandse Hoogte Cover design: Sabine Mannel, NEON Design, Amsterdam Lay-out: JAPES, Amsterdam ISBN 978 90 5356 077 8 NUR 740 © Anne-Mei The / Amsterdam University Press, 2008 All rights reserved. Without limiting the rights under copyright reserved above, no part of this book may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form or by any means (electronic, mechanical, photocopying, recording or otherwise) without the written permission of both the copyright owner and the author of the book. Contents Acknowledgements 7 Preface 9 Introduction 11 How It All Started 15 Part I Park House Life in Park House 21 Mrs Van Dam Dies 27 The Family 31 Eating Problems 37 Staff Vicissitudes 40 Mrs Scharloo Doesn ’ t Want To Go On 46 Daily Care 55 Everyday Life 63 Inadequate Care 71 Versterven 77 Wanting to Die 84 Rough Treatment 91 Reorganisation and Black Magic 101 Leontien and Mrs Grasberg 113 Strong Women, Loafing Men 119 Limited Labour Market 126 The Big Problem 131 The Coup and the Death of Mrs Driessen 137 Part II The Blauwbörgje Case The Nursing Home Doctor ’ s Husband 149 The Ex-wife 155 5 The Nursing Home Doctor 160 The Colleague of the Nursing Home Doctor 165 The Daughter 173 The Managers 177 The Internist 181 The Head Nurse 184 The Journalist 188 Mr Bruggeling 191 The Doctors at De Merenberg 193 The Researcher 197 How It All Ended 202 Notes 203 6 contents Acknowledgements Without the help and the hospitality of the staff, the residents and the visitors at Park House I would not have been able to study the hidden world of the nursing home. I have learned much from them and I am grateful. I would also like to thank those involved in the Blauwbörgje case who shared their thoughts with me, and the many experts who discussed var- ious aspects of nursing home care with me. There are also many who helped to make this book a reality, but I would like to mention a few who made a substantial contribution: Her- man Ader, Erik van Aert, Martin Boekholdt, Jan Eefsting, Faye Cossar, Judith Coutinho, Mariel Croon, Dries van Danzig, Robert Eggink, Sjaak van der Geest, Magdelena Hernas, Cees Hertogh, James Kennedy, Bert Keizer, Cilia Linssen, Forough Nayeri, Roeline Pasman, Rissa Philip, Ir- ene Schenker, Marjan Verkerk, Hendrik Jan de Vries, Gerrit van der Wal, Fons van Wanroy, and of course Onno Zijlstra. The observations in Park House were part of a study of versterven com- missioned by the Dutch Ministry of Health (VWS), the Dutch edition of the book, In de Wachtkamer van de Dood: Leven en Sterven met Dementie in een Verkleurende Samenleving , was made possible by a grant from Het Zonnehuisgroep. I carried out the research and wrote the book while I was a senior research fellow in the Department of Social Medicine and the EMGO Institute at the Free University in Amsterdam. The transla- tion was made possible by a grant from The Netherlands Organisation for Scientific Research (NWO). I would like to thank Robert Pool for translating the book into English. 7 Preface People living in care homes are probably the most vulnerable and least powerful individuals in society. Being dependant on someone else for all your health, social and care needs can result in the individual being si- lenced and marginalised. Despite a positive increase in research and practice interest focusing on this area in attempts to provide more positive relationship centred care practices general understandings and knowledge of care home prac- tices remain limited. What is essential is that the often very difficult and sensitive concerns inherent in providing institutional (and institutionalised) care responses to silenced and vulnerable people should be voiced, debated and given priority. In Death ’ s Waiting Room is an accessible and detailed account of the experiences of residents, staff and relatives in a care home setting especially in relation to the complex issues and decisions that come with the dying process. In the telling of sad, distressing and difficult stories Anne-Mei The highlights many key theoretical concerns but in a manner that makes clear the complexity of how such concerns are played out in practice. The presentation of life and death in Park House engages the reader with these lived complexities in ways that are both fascinating and chal- lenging. The reader is drawn into demanding and thought-provoking questions on urgent issues for society and for our own lives. The book is an essential and stimulating read for all of us trying to improve the lives of residents, relatives and staff in care homes. It is not only about how to understand better the challenges to providing better care but also how to understand and improve the processes and practices of supporting a good death. Dr Heather Wilkinson Colm Cunningham Centre for Research on Dementia Services Families and Relationships Dementia Services Development Centre Edinburgh University University of Stirling 9 Introduction The hidden story This book tells a hidden story. It is a story that concerns us all, but one that we would rather not hear, about a subject we would rather not think about. It is the story of the life and death of old people with dementia. It is a topic that we try and avoid as long as we can, until we are confronted with it when a loved one is admitted to a nursing home. The story does emerge occasionally, however, when an incident reaches the mass med- ia. That is what happened in the Netherlands in the summer of 1997, when the family of a man with dementia accused a nursing home of attempted murder, claiming that they deliberately allowed him to dehy- drate and refused to rehydrate him. The study The study was part of a project on versterven – refraining from artificially feeding and hydrating nursing home residents with advanced Alzhei- mer ’ s disease. 1 In order to explore and understand what happens to those with dementia who end up in nursing homes, I carried out two years of anthropological research in a nursing home in the Netherlands. Anthropologists study social phenomena through participant observa- tion: by being present and observing what people do and by participating in daily activities. The researcher gradually gains the trust of the group members and becomes an ‘ insider ’ , while simultaneously noting as an ‘ outsider ’ the things that the real insiders do not notice because they have become routine and internalised. 2 Contrary to quantitative survey research the questions in this type of ethnographic research are not all formulated before the fieldwork starts, but rather are developed during the fieldwork. The assumption is that you do not always know before- hand what all the relevant questions are going to be until you start the research and are exposed to the phenomenon in question. Important questions are discovered in conversation with the study population in practical situations. Some of the most important information, especially relating to sensitive and taboo topics, tends to surface in informal con- versations in corridors or coffee rooms rather than in formal interview settings. 3 If I had used different methods I would probably have learned little about the rough treatment of residents, the cultural gap between different ethnic groups or carer ’ s double jobs. Participant observation is the only way to study certain topics. It took time to penetrate the life of the nursing home and establish the necessary degree of rapport. However, when this had been achieved, 11 people came to me and started offering me information. The conversa- tions I had changed over time. Initially it was important for me to gather as much information as possible, whereas later the emphasis was more on collecting different opinions on the same events and comparing the views of the various people involved. Later the conversations developed a more reflective character and I tried to form interpretations and explana- tions through dialogue with my informants. The most difficult phase in my relationship with my informants started when I left the nursing home. I then had to try and distance myself from the people and experi- ences I had been involved with in order to be able to write about them critically. In the nursing home that I will call ‘ Park House ’ I was present a few days a week. I attended staff discussions about residents and discussions between staff and relatives. I assisted with simple tasks such as cleaning, feeding and washing residents. When it wasn ’ t busy I asked questions about things that had happened. Most of the time I spent in informal conversation with staff – drinking coffee and chatting. It took time to win their confidence, but they got used to my presence and increasingly they came to me and offered me their stories. In this way I came to understand life in a nursing home, and those who live, work and visit there. In this book I describe both the nursing home I have called ‘ Park House ’ and the Blauwbörgje case, in which relatives accused a nursing home of attempted murder when they abstained from feeding and rehy- drating a patient. In doing so I have not meant to suggest that the two nursing homes involved are the same. There are differences. They are in different regions, for example, and as a result Park House was much more seriously affected by labour shortages. Having said that, it can be concluded that the similarities are greater than the differences: the emo- tions of relatives when they have to hand over the care of a loved one to a nursing home; the communication with relatives; the work of the carers; the increasing workload; the dependency and power relationships be- tween residents and carers; the gap between the expectations of the fa- mily and what can actually be realized in practice; the way in which end- of-life decisions are made; the reorganizations; the supervision and management problems; and the ignorance of the wider society about what life in the nursing home is really like. My description of Park House does not necessarily apply to all nursing homes in the Netherlands, but what I describe is also not based only on my observations in that particular home. I also spoke to more than twenty staff members in another home in the east of the country, and with another forty experts. These additional interviews were carried out to check the findings from Park House and place them in a broader con- text. Information from these interviews has not been presented explicitly in these pages, but it has been integrated into the narrative. 12 introduction This book is not just a selection of events, but also a concentration. I have taken a magnifying glass to both the timeline and the main issues. Most of the time events in the nursing home unfold as described in the early chapters. As the book develops it focuses on a few specific inci- dents. There is a danger that this gives a negative and one-sided view of things. But researchers are meant to problematise and to question, and using extreme situations sometimes makes it easier to understand the phenomenon being studied. Although in writing this book I have been strongly influenced by those I got to know in Park House, it is not they I describe. In order to make the narrative readable I have created composite characters based on my experiences and the information obtained from the additional interviews. I also use terms such as ‘ white ’ and ‘ black ’ to refer to those of Dutch origin and those whose origin is in the ex-Dutch colonies in the Caribbean because this fits with the way in which the participants them- selves spoke. I have also chosen to use first names for the carers and first and second names for the doctors and other professional staff. This also reflects local usage. The nursing home and the carers In Park House scarcity reigned. The home was in financial crisis, as a result of which there was no money for many essentials. Due to a short- age of staff, residents did not receive the required level of attention. Dur- ing recent years the number of trained nursing home carers in the Neth- erlands has decreased and the level of training has declined. At the same time, the burden of work has increased because old people are being admitted to nursing homes later and therefore in a more developed stage of their illnesses. Carers who can no longer cope with the burden of work suffer burnout. Work piles up and no matter how hard they work, they never seem to get on top of things. This leads to feelings of help- lessness and indifference, and as a result motivation suffers. As a result of this combination of factors, carers often cannot do much more than get the residents out of bed and feed them. This is not just the case in Park House. According to one study, two thirds of nursing home carers in the Netherlands have insufficient time to care for resi- dents properly, and one in five carers admits to making residents wear ‘ incontinence gear ’ – a sort of nappy – because they don ’ t have time to help them go to the toilet. Another study has shown that 80 percent of Dutch nursing homes do not comply with the minimum requirements that the sector itself identified in 2001. The situation is worst in the Randstad – the Amsterdam-Utrecht-Rot- terdam conurbation – where Park House is situated. Nursing homes in this area have undergone a striking transformation in recent years. The largely white Dutch residents are cared for by black carers from the for- introduction 13 mer Dutch Caribbean colony of Surinam. In Park House more than 60 percent of the staff is black. In the department that takes care of resi- dents with dementia, the percentage is even higher, and there are units operating with an entirely ‘ black team ’ . For many residents this is a situation that takes some getting used to. They have had little contact with people from Surinam and know nothing of their culture. The Surinamese carers also have to bridge a cultural gap. They insist that they would never ‘ dump ’ their elderly relatives in a nursing home, and so they are doing a job that goes against the grain of their cultural norms and values. There are other problems as well. They regularly feel discriminated against by both the residents and their relatives. There are also socio-economic differences. The Surinamese carers are usually sin- gle mothers who have to work very hard just to survive. They usually have to juggle several jobs. Due to the heavy work burden and having to take care of a family single-handed, they are often tired. Nursing homes seek to solve these problems through reorganization, restructuring, mergers, and privatisation. There is talk of stricter rules and sanctions. Managers want to make the organization less hierarchi- cal, so supervisors are included in the management team, but as a result they are taken away from day-to-day tasks and the distance between supervisors and carers becomes even greater. These problems – which are by no means unique to the Netherlands – are only likely to increase. With an ageing population in many developed countries, the number of those with dementia will increase, and the ur- gent question is: How are we going to cope? This book shows that this is a problem that is already upon us. 14 introduction How It All Started A phone call from the newspaper ‘ Have you read in the paper this morning about what ’ s been happening in the Blauwbörgje nursing home? ’ my friend says when I answer the phone. She is a journalist with one of the national papers. If you have a minute I ’ ll tell you, ’ she says. ‘ I ’ d really like to know what you think. The relatives of a man with dementia have charged the nursing home of de- liberately allowing him to dehydrate – not giving him enough to drink. They call it versterven . Apparently that ’ s their policy in cases like that. ’ ‘ I ’ m not sure whether I can comment on that, ’ I say guardedly. ‘ I don ’ t know anything about nursing homes or about dementia. ’ ‘ But what do you think? ’ she asks enthusiastically. ‘ His relatives knew absolutely nothing. They found out just in time and managed to get him to hospital. There they put him on a fluid drip and he recovered. He ’ s now sitting up in bed and eating. The doctor says that they were just in time otherwise he ’ d have had it. Now that ’ s really something. ’ ‘ Strange, ’ I say, ‘ I always thought that in nursing homes they had such good communication with relatives; better than in hospitals. I can hardly imagine that they wouldn ’ t have discussed this with the relatives. ’ I had once been in a nursing home, to visit Mrs Schilling. She had been a patient in the hospital where I was doing an anthropological study and she had been transferred from the hospital to a nursing home. When I arrived, the receptionist took me aside and asked care- fully whether I was a relative. It turned out that Mrs Schilling had died a few days earlier. I made an appointment to speak to the doctor who had treated her. During the interview I was struck by they very different ap- proach that he had toward his patients compared to what I had become used to in the hospital. He described in detail how everything had been done to make Mrs Schilling as comfortable as possible. They had spoilt her he said, and she didn ’ t have to get out of bed if she didn ’ t want to. The doctor also described the support given to her family. He described how her condition had deteriorated slowly during the three weeks that she had been in the nursing home. He knew more about her, her family and her dog than any doctor in the hospital knew about a patient, even those who had cancer patients they had been treating for years. And even then, he still gave all the credit to the carers because, he said, they did all the real work while the doctor stood on the sideline. I had twice encountered patients with dementia. One was a jolly wo- man who poured herself shots of gin from a bottle hidden in her bedside cupboard, which she described as ‘ the fridge ’ . Once she attacked ‘ intru- ders ’ with a computer screen she had taken from the doctor ’ s office. The other was ferried to the hospital, from the nursing home where she had 15 lived for years, to say goodbye to her husband, who was dying of cancer. She sat next to his bed in her wheelchair, in a world of her own. He was happy with her visit and stroked her hand, even though she did not re- cognise him. He died the next day. I try to imagine those two demented ladies on a fluid drip. And I try to imagine the nursing home doctor talking to the relatives. What is it like on a nursing home ward populated only by the demented? This new setting after years of observation in hospitals intrigues me. It seems strange that I had hardly ever been in a nursing home, given the increas- ing relevance of issues relating to ageing. I look out across the concrete towers of the university complex where I have been working for the past few weeks. It is July 1997. It is boiling hot and the windows don ’ t open. ‘ Is this really about versterven ? ’ I ask. ‘ If I understand you rightly then it might just have been a communication problem. When emotional is- sues are involved, the message often gets distorted. I know about the problems of communication between doctor and patient from the bad- news meetings in the hospital, in which the doctor informed the patient of the death sentence of their cancer diagnosis. This often led to misun- derstandings by patients and relatives. It ’ s a different situation, I know, but they are both about life and death. If the relatives are not yet ready for death then the bad news is not absorbed. ’ There is silence on the other end of the line, then she asks: Can I quote this in the paper? In the following weeks the papers are full of the Blauwbörgje story. Nowhere is there a response from the nursing home or the doctor re- sponsible. ‘ No comment from Blauwbörgje, ’ the papers say. Experts ex- plain, columnists give their opinion. The discussion is about versterven – the final phase in the gradual process of deterioration that people with dementia go through, when doctors and relatives decide that is not long- er in the patient ’ s interest to prevent ‘ nature taking its course ’ with infu- sions and drips. The dying do not eat and drink well, experts report in the media; so versterven is simply part of the process of dying. But this explanation does not calm public opinion. People are not familiar with the process of dying and they worry about what is happening in nursing homes. In the tram, on my way to the university I encounter Gerrit van der Wal, Professor of Social Medicine and my boss. The conversation turns to what is now generally referred to as the Blauwbörgje affair. We spec- ulate about the precise chain of events and wonder whether such things are common in nursing homes. ‘ You would need to do some participant observation to find out, ’ I say. ‘ Do you think so? ’ he asks. ‘ Yes, and you can only understand what happens if you have had di- rect experience, if you know how people work and what the circum- stances are. Then you can understand the experiences and statements of 16 how it all started those involved. I wouldn ’ t be surprised if the issue here wasn ’ t versterven at all. It would be interesting to find out. ’ ‘ It ’ s funny you should say that, ’ he says. There have been questions in parliament about what is happening in nursing homes with regard to dementia and versterven . There will probably be a call for research, and it ’ s quite likely that we will be asked to do it. ’ Versterven Basically versterven, as it is used in this book, refers to abstaining from giving food and liquid to patients who refuse or who do not experience sensations of hunger and thirst due to old age or advanced Alzheimer ’ s disease. The word versterven is a verb; the noun is versterving It does not translate into English unproblematically as ‘ terminal dehydration ’ Ver- sterving has been controversial in the Netherlands because of the ambi- guities and connotations of the term itself, ambiguity about the nature of tube feeding, uncertainty about whether or not it is painless and the ex- tent to which the dying person is in control, and uncertainty about what constitutes natural death. Many interpreted versterven as a transitive verb (a kind of killing) when it is in fact an intransitive verb (a kind of dying). Versterven is not something you can do to people, it is something that happens to them. In the media discussion, however, versterven was equa- ted with terminating hydration or feeding, or actively not initiating artifi- cial feeding and hydration in patients who did not spontaneously abstain from eating and drinking. A brief consultation of a few dictionaries re- veals further sources of ambiguity: (1) To die (out), to wither, to wilt; (2) To descend (in the sense of ‘ to pass on by inheritance ’ ), to devolve; (3) To hang (meat); (4) To fast, mortify the flesh, renounce earthly pleasures. The associations with ‘ hanging meat ’ and with terms like ‘ wither ’ and ‘ wilt ’ obviously spoke to the imagination of those who bothered to look it up. The term also has strong currents of religious meaning. Indeed, B. Chabot, the psychiatrist who first used the term in the discussion of terminal dehydration, claimed that he had been motivated in his choice of the term by Job 14:8 : ‘ Though the root thereof wither old in the earth, and the stock thereof die in the ground ’ ( Indien zijn wortel in de aarde veroudert, en zijn stam in het stof versterft ). Fasting, mortification of the flesh, renunciation, all suggest voluntary choice and control, as well as some higher end to which these sacrifices are a means. Although this resonance with Christian tradition and belief was only a minor thread in a secular discussion, it was nonetheless present, and it contributed to the ambiguity. 4 how it all started 17 Part I Park House